HI Nancy
Sounds like you have been through a lot. I have read a bit about primary being hidden or sometimes undiscoverable. Even that sometimes the body beats a tiny primary but before it happens it starts something somewhere else.

I have this plan shaping up, for the future, to develop a bit of a map as to how to make the body as hostile an environment as possible for cancer, I guess this means health, fitness and diet.

Trouble is the NHS, no one has had a conversation beyond 'good results from surgery', breached capsule but tests show no spread as far as can be detected from node' and 'tonsil tumour hadn't breached but was bigger than expected' so 'we have to tackle any cells left but there isn't anything we can detect right now'.

I then get glimpses of letters drafted to GP that have the staging T string but no one has sat and explained this and what poorly defined margins are.

Public health care moves so fast, like a conveyor belt, not that I feel I am being neglected, it has moved quick and my treatment I gather form forums and research is on target with leading protocols but a bit more information would be great from consultant.

I'm going to raise this in discussion with him. I think also they are fearful of maybe wrapping up to much technical speak in case they scare the hell out of someone.

Must keep in mind the quick operation, neck dissection and bilateral tonsillectomy has got rid of the tumours and no spread elsewhere in mouth and throat so that is a lucky break.